Entering a new stage

Outside, the signs of autumn give the impression of a perfectly normal season: crisp weather, migrating birds, apples falling from the tree, laundry drying in the sun, the smell of burning wood.

But for me and my family, a new, unfamiliar wind is blowing into the world. Irrevocable change has set in.

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On September 14th, I was hosting an afternoon tea party at our wee yellow house in Ii for friends who’ve been supportive during my illness. Such an event had been on my wish list for a long time, but there were always reasons to delay. Knowing that winter was around the corner and that my health would deteriorate, I quickly drafted the invitations and sent them around.


It was new for me to start baking a week in advance, but I knew I needed to save energy to get things done in time. A regime of baking one cake a day worked well. Some cakes, such as my orange cake, even taste better if it stays in the tin for a few days. It was a matter of careful planning. During the preparation I realised that this would be my very last party, so I was doing everything to make the event a success. 


I don’t take my friendships for granted and wanted to show my gratitude. Offering cakes, pasties, sandwiches, and quiches and giving everybody a good time was the goal. We drank coffee and tea from my favourite, beautiful Arabia bone china cups. Balloons and decorations were put up and I had a little present for all visitors in a basket.


It was a wonderful afternoon filled with laughter in the cosy kitchen but also with tears when I told the group about my farewell struggles and that our gathering should be seen as a goodbye. In retrospect, it is interesting to realise what the unconscious mind already knew. At that stage, no doctor had told me that my life would end soon. On the contrary, the aim was to extend my life with the help of the magic red devil chemo treatment.

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Two days later, September 16th, was another stunning autumn day. I met with Erika, a BBC journalist at Nallikari. We faced the bright blue sea, a yellow sandy beach, and felt the warm autumn sun on our faces. We had time to ourselves and without an exact plan, we set off on the path along the sea. Hoping to catch a view of cranes, I had brought my camera and lenses. We talked, among other things, about finding topics for articles, blogs, and video making. We enjoyed the midday sun and took our time to walk around the island. I estimated that we easily walked six or seven kilometres that afternoon. It turned out to be the last day with such a glorious autumn edge.


On the 18th, I was hospitalised with stomach pain and vomiting. On the 19th, the verdict fell. “What do you think of the new chemo?” The young doctor looked me straight in the eye. “I think the red devil chemo doesn’t work,” I said. “The tumour markers have risen too much,” the doctor agreed. “We can’t cure you anymore. You’re palliative from now on.” She looked at me with empathy and compassion. I nodded. The glorious clouds from the last weeks had started to ripple.


From Patient to Palliative

Once you’re palliative you get a different status; you become a palliative entity. As palliative care is a subspecialty of medicine, a flock of new doctors and nurses introduced themselves to me. I was told that I would be transferred to the palliative ward as soon as a place became vacant, which was three days later. “Our aim is to improve your quality of life and give you the help you need,” one of the doctors explained. An anaesthetist and nurse assistant explained the pain pump: a device I could use to administer pain medication to myself whenever needed. The oncologist also prescribed anti-nausea medication. Nurses came with intravenous fluids to meet my caloric and nutritional needs. Really? Was it not last Sunday – only five days ago – that I stuffed myself with blueberry cake, scones with jam and whipped cream, and sandwiches?


Frankly, the transition from patient to palliative was overwhelming.


I didn’t have many thoughts about the palliative ward beforehand. I knew that in the Netherlands they are run by medical staff and caring volunteers, and the atmosphere in the hospices is warm and homely. However, I had never seen a Finnish hospice from the inside.

But I couldn’t be bothered either, since already on my second day in hospital I was dealing with anxiety and restlessness: tossing and turning, unable to stay in bed for more than five minutes. One minute I felt freezing cold, the next, I was sweating excessively. I had a dry mouth and lost my appetite. I was feeling as if I was constantly on the edge and called my husband every hour to tell him how I felt. I didn’t sleep for three days.


My behaviour puzzled me. Of course I was anxious, my death warrant had just been signed, but on the third day of my stay I realised something: Although I was understandably experiencing mental turmoil, this was unusual behaviour for me. I’m a calm and composed woman –  and would like to stay that way until the end.


It took me three days; I had just arrived at the palliative ward when I decided to open my mouth. “I don’t want that stuff any longer,” I said to the doctor in the palliative care unit. With “that stuff” I was referring to either Zofran Zydis or Sancuso, both given to prevent nausea and vomiting. I had a slight suspicion that one of them was causing my restlessness, my sleep deprivation, my anxiety and my cold and heat fits. I felt exhausted and couldn’t stand it any longer. I was told that patients' wishes are the guiding rules on the palliative ward, so I felt within my rights.


A day after the medication was taken off the list, I started to feel better – and wanted to go home. “I need to sleep in my own bed,” I explained to the doctor. She approved. I arrived home on the 24th of September. With the help of home care nurses, I managed with a nasogastric tube, a subcutaneous tube with anti-emetic fluid, the stoma, and the parenteral nutrition via portacath.


However, my stay at home lasted only three days. I couldn't hold food, was constantly nauseous, quickly lost six kilos and felt incredibly weak. There was no way my husband and I could manage the situation.


The Palliative Ward

Since the 30th of September I’ve been back on the palliative ward. The place looks big. “Twenty-six rooms and forty staff members,” one of the nurses told me. I don’t know exactly how many patients it can host. Big windows, a family/activity room, one and two person rooms, spacious toilets and colourful wall paintings on white and blue walls. However, the hallway looks like a car park: filled with trolleys, wheelchairs, grip cars, beds, overbed tables, medical carts, chart trolleys, and whatever else all over the place. Initially, it gave my scattered mind a messy impression, but I barely leave my room these days, and my room is calm, bluish, and grey. From my bed I look straight into the crowns of birch trees, which gives the room an lofty feel. Despite the agreeable setting, there's a lot to process these days.